Thursday, September 13, 2012

1) You understand all the terminology used in medical TV shows and instantly know when it is used incorrectly or out of context.

2) You can spell and use words like "promyelocytic," “fibromyalgia,” “dysautonomia,” "postural orthostatic tachycardia," "myofascial" and "thoracic outlet" in a sentence.

3) You've been to so many medical appointments that you have actually lost count of the number of doctors who have seen you just wearing a hospital gown.

4) At home you have a stack of your own medical records that could fill several file folder and then some.

5) You've stumped more than a few doctors with the complexity of your health problems and the abundance of your medical symptoms.

6) You discover a new empathy for Humpty Dumpty when you find out your doctors can't put you back together again either.

7) You have been dumped by, or needed to fire, one (or more) of your doctors.

8) You take so many prescription and over-the-counter medications, vitamins and supplements, you need a shoe box (or three) to store them and several different pill boxes to organize them.

9) Most of the contacts in your phone book are for your doctors and other healthcare providers, pharmacy and health insurance company; most of the apps and books on your tablet are health-related.

10) You've got a whole collection of medical devices and mobility aids and you aren't afraid to be seen using them in public.

11) You realize that on some days you are more like Little Miss Grumpy than Little Miss Sunshine.

12) You are frustrated with a lack of appropriate words to adequately describe your chronic illness and dread having to explain, once again, how a healthy person's "tired," "fatigue" and "pain" feel nothing like what you are experiencing.

13) You overhear your spouse or other family members explaining to others that you are chronically ill.

14) You stop dreading your pain-filled, sleepless nights and start looking forward to catching up with friends around the world on Twitter and Facebook during the wee hours of the morning.

15) You talk about the chronically ill friends you've connected with online like you talk about your friends in real life.

16) You rant about your bad days on Twitter, write about your life with chronic illness on your blog, collect images of cool, inspirational sayings on Pinterest and share what you know with others on Facebook.

Monday, September 10, 2012

The theme this year is: Got An Invisible Illness? Share your images of Visible Hope! Which is where the vlogging comes in...

I put together images of myself from the past 8 years, during which time I have been disabled by my chronic, invisible illnesses.

I can honestly say that I have done everything I could to try and "get better" over the last 8 years. Ultimately, I learned that my doctors and other health professional could not do that for me. Rather than be bitter or angry, I worked hard to accept this as my current reality. That helped me switch my focus to managing my illnesses the best I could using the self-help measures I learned at the online CFIDS and Fibromyalgia Self Help program.

Today my number one priority is to do the very best job I can to take care of myself so my illnesses don't prevent me from doing the things I can do.

That doesn't mean that I have given up hope! I still believe that one day I will feel better. I am confident that some smart researcher will discover better medications to manage my symptoms so I can live with less pain and less fatigue.

Until then, I continue to do what I have been doing in earnest over the last 5 years: learning to live my best life despite chronic illness and inspiring you to do the same.

This is Selena (on the right.)

She lives with invisible chronic illnesses.

Her doctors can't make her better, so she tries to live her best life despite her invisible chronic illnesses.

Her illnesses have disabled her for the past 8 years, but she still hopes one day she will feel better.

Thursday, September 6, 2012

This is a reprint of an article from the HCV Advocate September 2012 Newletter, reprinted with permission from the author. The reason I am reprinting it is so you can see how my comments and suggestions were incorporated into this article, which is very exciting for me!

I've enhanced the original article with links to the products I used duing Hep C treatment which go to Amazon.com. You can just as easily find most of these products at your local pharmacy or Drugstore.com too.

By the way, many of the patients mentioned in this article are members of the private Facebook group Hepatitis C Family and Friends. I too am a member of this group. I have found the members to be extremely warm and inviting, willing to share suggestions and advice and always there to lend an ear or offer support. The group is comprised of people thinking about, currently undergoing or finished with Hepatitis C treatment.

I encourage you to join the group to get the peer support you'll need to make your journey through Hep C treatment a better one.

In May 2011, two protease inhibitors bolstered the fight against chronic hepatitis C virus (HCV) infection. The FDA approved boceprevir (Victrelis) and telaprevir (Incivek) for treatment of patients with genotype 1. Either drug (but not both) is used, along with peginterferon and ribavirin. With response rates hovering around 80%, these are weapons of mass destruction.

I have a lot of experience with HCV treatment, both personally and professionally, so much that I wrote a book (Free from Hepatitis C) to help patients through the process. However, I have not experienced triple therapy, and I am curious about the real story, the nitty-gritty experiences beyond clinical trials, so I asked the experts—patients.

The following is a collection of tips from triple-therapy patients. Talk to your medical provider before trying any of these. Although brand names are mentioned, generic versions may be cheaper. Some contributors have given permission to use their names. To all, named and unnamed—thank you.

Patient advocacy, in particular self-advocacy was mentioned. “Meet the members of your treatment team BEFORE you start treatment.” advises blogger Selena Inouye (www.ohmyachesandpains.info) Sometimes patients meet their primary nurse the day of the first interferon shot, but ask to be seen earlier to see if you feel comfortable with the nurse. This gives patients time to think about what they were told and formulate follow-up questions.

Selena recommends bringing someone with you to appointments to take notes and act as your advocate. Ideally, your doctor has given you information about what to expect, the risks and available resources to help you navigate treatment. Be sure to discuss what side effects need reporting, who and when to report these to and who will be the main person managing them. Find out how to reach medical personnel when the office is closed and what to do in an emergency.

Write everything down and keep all your notes in one place. Don’t rely on your memory. Document everything your medical provider says, record when you took your pills, note your appointment times, and keep copies of all of your labs.

Know your treatment protocol. Confirm that your medical provider uses a highly sensitive viral load test with a lower limit of HCV RNA detection of ≤ 10-15 IU/ml, and quantification of ≤ 25 IU/ml. If something seems amiss or your medical provider deviates from the protocol, ask questions. Use the pharmaceutical company help lines to educate you, support you, and verify all concerns. Your pharmacy is another resource to use.

Mary Northrup finished treatment in May. “This treatment taught me to be my own advocate. Understand that there will be times where you have no choice but to push through the pain and discomfort, but don’t be afraid to rely on your medical team and your support system to lend you a hand.”

“Don’t be afraid to bug your nurse with questions,” says Mary, and if you are like most, you will have many questions. This solid advice is hard for some to practice. We don’t want to be a nuisance. However, as a nurse, I appreciated questions from patients. Patients with questions are engaged in their treatment. In fact, the ones I worried about the most were the ones who never asked me anything.

Here are some more tips:

Order the patient starter kits from the drug companies before you begin your treatment. Read all the materials before your education session and bring a written list of questions with you.

Don’t try to do too much.

Accept help and food when offered.

Ask for help.

Delegate.

Rest more, pace yourself and conserve your energy.

Let go of as much as possible.

Remember that “No” is a complete sentence and don’t be afraid to use it.

If you and your medical provider think that you should go on disability, then by all means, do it.

Nutrition and 20 Grams of Fat Diet

Many people stressed the importance of maintaining nutrition, and for those taking telaprevir (Incivek), the 20 grams of fat diet headed the list. This is particularly important, as fat optimizes the effectiveness of telaprevir. Deanne English points out that although this is difficult for nighttime doses it is important.

John Adamski (Lake Tahoe HCV Support Administrator) mentioned that insufficient fat with telaprevir caused anal burning and discomfort, and that taking telaprevir 20 minutes after eating worked best for him. Many echoed Teri Gottlieb’s suggestion of collecting lists of foods with 20 grams of fat. Choose food with high quality fat, such as peanut butter, avocado, eggs, and whole milk.

Eat as healthy as you can, as this provides energy. Before you start, stock up on staples and frozen foods. Include items that may help with tummy upset, such as crackers, rice, applesauce, Melba toast, tea, and ginger-flavored items. Selena suggested variety. Nuts, seeds, and bars are handy to have. Always have on hand the fixings for shake mixes. Selena added a tablespoon of canola oil to Boost Carb Glucose Control.

Digestion and Anal Issues

What goes into the body is important, but the other end of the digestive tract dominated discussion about telaprevir. The big issues are diarrhea, anal burning and itching, and butt rashes. To avoid bottom problems and control diarrhea, John suggests taking a good probiotic with 8 ounces of Kefir. (Selena's note: Be careful with probiotics if you are immune suppressed, i.e. your white blood cell count in below normal.) Many used Imodium; one patient took a smaller dose more frequently, with meals. (Selena's note: try using the liquid and taking 2 ml with meals.) Soluble fiber supplements were also mentioned, helping with both diarrhea and constipation.

To protect the bottom, everyone had personal favorites. One wrote, “Get both Analpram (Selena's note: this is a prescription topical hydrocortisone cream) and A&D Ointment. Use Analpram only for anal itching. All other days, always apply a generous amount of A&D Ointment after defecation; it will save you from considerable pain the next time.” Other recommendations were Balneol lotion, zinc ointment, and diaper rash products such as Desitin. (Selena's note: Balneol saved my butt, literally. And I will continue to use it from now on. CVS makes a generic of it, but the best deal I found was ordering it through Subscribe and Save at Amazon.com.)

Other Advice
A critical part of success is to take medications on time and as directed. Selena bought the biggest pillbox she could find and labeled it with pill times. (Selena's note: mine was the Ezy Dose Four-a-day Weekly Maxi-pharmadose Medication Organizer.) Program electronic devices, such as your phone or watch to remind you.

“Start pounding down water two weeks before therapy,” says John Adamski. “The goal is one-half your body weight in ounces/day.” In other words, if you weigh 150 lbs, then aim for 75 ounces of water daily.

Find a way to track your water intake. Selena bought a container that held eight glasses of water from Bluewave. She added flavors such as lemon, lime, mint, cucumbers, a splash of fruit juice, and MiO mix (sucralose-based drink mix).

John mentioned that numerous studies showed that people with high vitamin D levels achieved a higher cure rate. Caffeine also seems to give people an edge. This month’s HCV Snapshots includes information about vitamin B12 and zinc supplementation. If you are interested in supplements, talk to your medical provider about these prior to using them.

Psychosocial Issues

Managing the emotional highs and lows of HCV treatment can be summarized in two words: antidepressants and support. Pretty much everyone I talked to used antidepressants during treatment.

“The first thing I learned was to STAY CALM,” wrote Mary Northrup. She did whatever she could to achieve that goal, including turning off the news. “Go easy on yourself. This therapy can be harsh on one mentally...give yourself permission to be a goof ball.”

Attend an HCV group. Education, information and identification of resources are a valuable focus of HCV groups. Mary received information and found groups acted as a sanity check. Humor is another benefit often gained by being with those who know what you are going through. Where else can you find a group of people who laughingly refer to themselves as the Friday Night Dart Club?

Keep friends and family informed. Mary did this via an online journal (or blog). Selena started blogging and then found that Facebook and Twitter were better ways to communicate.

As for support, Selena says, “Recruit a cheering squad. I used Sign Up Genius to engage my social network.” On difficult days, use your support network to vent. Remember to practice restraint of pen and tongue. If you feel angry or defensive, talk to a friend and don’t post anything hostile for at least 24 hours after running it by a trusted confidant.

Surround yourself with things you enjoy. During difficult times, distract yourself with anything that holds your attention: audio books, movies, TV, scenery, etc. Every day do something that makes you happy and treat yourself to whatever you need to get through this time. One man praised the power of a relaxing bath using herbal bath salts (legal ones) while listening to calm music.

Celebrate treatment milestones as you go along—there will be many (first shot, first week, first day that you forgot you were on treatment). “Invite your friends to party with you, even if it is virtually on Facebook or Twitter,” advises Selena.

“Patients contemplating this therapy need to be determined and accept the fact that they will be fairly miserable for at least a few months of this therapy,” said John. “But look at the CURE RATES !!!”